The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study.
Sascha R Bolt, Jenny T van der Steen, Chandni Khemai and 3 others
PMID 33432696WHAT IT FOUND
People with early-stage dementia wanted meaningful activities, independence and trustful care.
They described mixed feelings about the future and end of life; some avoided these talks, while others left decisions to family.
Key findings
01Participants wanted to keep doing activities that mattered to them and to remain part of society.
02All participants valued doing things their own way, and some disliked others taking over tasks they could still do.
03When thinking about end-of-life decisions, participants placed trust in others, sometimes without having formally discussed their wishes.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for RNs
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What it does not show
The sample was small and purposive, recruited by care professionals who judged who could take part, so people considered unwilling or unable were not included. People willing to discuss end-of-life topics may have been more likely to agree to an interview. Informal caregivers were present in some interviews, and one caregiver intervened, which may have influenced answers. Most participants were in early-stage dementia and living in the community or supported housing; one had recently moved to a care home and had more advanced dementia. The topic list did not cover some aspects of life, such as sexuality. Qualitative interviews describe perspectives; they cannot show whether any care approach improves outcomes.
Declared interests
No conflicts of interest were declared. The study was funded by ZonMw.
The easy way to misread this
Do not read these themes as proof that a person-centred or advance care planning programme improves care. The study only describes what 18 people with early-stage dementia said, and some participants were selected by recruiters or had caregivers present.